Just 4% of women of childbearing age with cancer take steps to mitigate the risks of infertility inherent in many treatments.

By Bonnie Rochman | @brochman | April 2, 2012 |TIME Healthland

For young people diagnosed with cancer, infertility is one of the most devastating potential side effects of treatment. Historically, especially for women, who have more complex reproductive tracts than men, there wasn’t much to do about this sobering reality. But over the past few years, a new field called oncofertility has raised awareness about new technological advances and the importance of offering patients the choice to preserve their fertility via many of the same techniques used by couples who have trouble getting pregnant.

Fertility preservation has allowed countless cancer survivors to build families after the fact, relying upon frozen embryos, eggs or sperm. There’s research being done on maturing ovarian follicles outside the body with the hope that one day soon, viable eggs can be coaxed forth. And in 2010, the first U.S. baby was born from frozen ovarian tissue that his mother had transplanted back into her body after surviving cancer.

That year, I wrote about 6-lb., 13-oz. (3 kg) Grant Patrick Tucker:

His mother, Amy Tucker, 32, of Columbia, Ill., had one of her ovaries removed in 1998 at age 20 when the technique was still experimental. That it happened at all was pure chance; Tucker’s nurse had recently attended a lecture about the new procedure and mentioned it to her. In 2009, a year after getting married, Tucker, a Hodgkin’s lymphoma survivor, had the ovary replaced, and within eight months, she was pregnant. “Every day I look at Grant and I’m like, You are truly a miracle,” she says. “I am so grateful I was in the right place at the right time.”

Yet a surprising number of women are not following in Tucker’s footsteps. Each year, more than 120,000 U.S. women under age 50 learn they have cancer, but only 4% of women of childbearing age who have cancer are preserving their fertility, according to a study published in March in the journal Cancer. The news puzzles advocates of oncofertility, and suggests that efforts to educate women about ways to safeguard their fertility need to be stepped up.

For the study, researchers at the University of California, San Francisco (UCSF), surveyed 1,041 women diagnosed with cancer between the ages of 18 and 40 years. The women — diagnosed with leukemia, Hodgkin’s disease, Non-Hodgkin lymphoma, breast cancer and gastrointestinal cancer — were randomly selected from the California Cancer Registry from 1993 to 2007. The vast majority of the women — 918 in all — underwent chemotherapy, pelvic radiation, pelvic surgery or bone marrow transplants that could have adversely impacted their potential to bear children.

While 61% of women were counseled by clinicians that cancer treatment could leave them infertile, just 4% chose to actually do something about it. The good news is that rates of women pursuing fertility preservation increased steadily over the study period, from 1% in 1993 to up to 10% by 2007.

“We are definitely making progress,” says Kate Waimey Timmerman, program director for the Oncofertility Consortium, a national initiative based at Northwestern University that encourages doctors to consider patients’ fertility before launching cancer treatment. “We are getting the message out there. But I was shocked that only 4% of women are actually undergoing fertility preservation. That shows that significant barriers still exist.”

Ethnicity, education and age are some of those barriers. White heterosexual women who were younger, had graduated college and were childless were most likely to be informed of the risks of cancer treatment and to move forward with fertility preservation, according to the study. Dr. Mitchell Rosen, the study’s lead author and director of the UCSF Reproductive Labs and Fertility Preservation Program, chalked the differences up to sociodemographic “health disparities.” Rosen told ABC News:

“There remains a large unmet need for fertility preservation,” he said. “Chemotherapy and radiation save lives, but they potentially compromise the ability to carry on a legacy, something that we all may take for granted.”

Just as it is automatic for patients to consult with a plastic surgeon to discuss reconstruction after a mastectomy, Rosen said fertility consultation should be a part of the process, as well. But, while reconstructive surgery is covered by health insurance, fertility preservation is not, and it can cost as high as $20,000.

Knowing your options is particularly important as cancer survival rates continue to rise. Many women who’ve battled cancer and later had children have said that the very act of fertility preservation felt life-affirming, as if they were thumbing their nose at cancer. Just imagine the converse: that you manage to beat cancer and try to move on with your life only to learn that you can’t bear children. As Gwen Quinn, a specialist in reproductive health and cancer at the University of South Florida, put it in 2010: ”If patients say they don’t care about that right now, they just want to get rid of the cancer, they need to be told that in five years they may feel differently. They should at least be informed.”

Bonnie Rochman is a reporter at TIME. Find her on Twitter at @brochman. You can also continue the discussion on TIME’s Facebook page and on Twitter at @TIME Read more: http://healthland.time.com/2012/04/02/most-young-women-with-cancer-dont-try-to-preserve-their-fertility/#ixzz1rY8Xm6Qt